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September 14, 2014

The posts added to this blog in 2014 are out of order from those posted in earlier years. They were transferred here from a now-defunct site because I wanted to preserve the documentation of my husband's and my funnier experiences in the world of dealing with his aphasia, apraxia and agraphia. The rest of the blog is still a documentation of our lives in the post-stroke years but they were written diary style, as things were happening and those posts are a mixture of what you'd expect with a couple dealing with the loss of language---the ups and downs, the rants, heartbreaks, triumphs, humor, and sadiness. My husband has since passed away after living with severe language disorders and right-side paralysis for twelve years. He was an amazing man, the way he played the hand that was dealt him. I learned a lot over those twelve years and I shared it all here in this blog.....

July 16, 2014

The
atmosphere here on the Planet Aphasia is warping my waffles. Don't ask
me what that means. If your waffles are warped too, you'll understand.
If not, trust me when I say that it's not a good thing here in the city
of Caregiverville.

Every year there are eighty thousand new cases of
the language disorder, aphasia, and I get a singer. Headline: Giddy
Little Husband Tools Around In His Wheelchair Greeting His Day Like He's
Been Over-Dosing On His Celexia Again.

"Happy birthday to you, happy birthday to you," my husband, Don, belted out like he was determined to be heard on the moon.

The problem is no one was having a birthday. The song is one of two
that Don's aphasic brain can sing using actual lyrics. Well, sort
of---the words often come out like they went through a blender first.

I should be happy for lyrics. Any lyrics. After all, Don has so few
words in his vocabulary since his stroke. But these two songs are
different. They're ones my husband learned when he was still using a
highchair and they're stored in a relatively undamaged part of his
brain. Even so, hearing "happy birthday" was a pleasure this
morning---for the first hour. In the second hour, sweet little wifey poo
that I am, I politely requested that he switch to his other song.

"Jesus likes me. Yo, you know," he complied. Okay, so he's got work to
do on that childhood favorite before he's ready for American Idol.

"Yo," I interrupted Don, "Jesus likes me? I think he loved you when you were a kid."

This afternoon we were coming back from running errands and no one had
yet found the switch on the back of Don's head to turn him off and he
was getting annoying. Back up here---I'll admit that I was more than
annoyed. I'd reached my quota of being a Nice Nancy about the never
ending, loop of songs.

I pulled over to the side of the road and
told him to get out if he couldn't behave himself. Hey, it worked on my
brother and me when we were kids so I figured why not give it a try.
And for a split second I thought that I really could do that, shove Don
and his songs out the door and drive off. How much trouble could a
person get into for leaving a wheelchair bound guy sitting at the side
of a country road, singing "Yo, Jesus?"

When I shifted the car
into park, Don looked at me as if---well, as if I'd warped my waffles
for good this time, permanently indenting brain matter that isn't
suppose to be marked with such a precise pattern of man-made
deformities.

"I mean it," I practically shouted, trying to sound
mean and bitchy. "Get out or get quiet!" If I were inclined to be
honest here I'd admit that it wasn't much of a stretch for me to be the
perfect bitch. Four hours of "Jesus has a birthday" or whatever it was
that Don was singing at the top of his happy little lungs was doing a
number on my head.

My husband took in my angry words and gave me
an angelic smile, his blue eyes smoldering with mischievousness and
after a very---and I do mean very---long pregnant, aphasia driven pause he
said, "Change lanes."

I stared at Don for a full minute. I
couldn't have been more astonished if he'd just used ruby red fingernail
polish for eye liner and I wanted to bang my head on the steering
wheel. (Now you know how waffles get warped in Caregiverville.) It's
been five years, ten months and seven days that I've been trying to
teach Don to say "change lanes" and "turn here" when we're in the car
and he's frantically trying to get me to do one or the other. And the
gods of Aphasia, bless their wicked asses, picked that time to let the
words come down the pike and out his mouth.

This article appeared at Yahoo Contributors but they are going out of business and the rights to publishing it reverted back to me. So I've moved it and others this month to my blog to preserve them. If they seem out of order to the rest of the content in this blog, that is the reason.

The
scariest phrase in the English language, according to the dog, is 'baby
gate.' He's on a diet so those words come up often in our
conversations. All I have to do is say 'baby gate' and he goes off
running with his tail between his legs, his little toenails clicking on
the linoleum. Since I started working on the internet, the dog has
gained three of his nineteen pounds. A lot of people can't see the
direct correlation between my website job and Cooper's gain weight, but
it's actually quite easy to explain. The dog thinks my computer wardrobe
is an ATM machine that dispenses Pup-Peroni treats. The more time I
spend dripping assorted liquids on my keyboard and sneezing on the
monitor, the more opportunities for our pudgy poodle to make Pup-Peroni
withdrawals.

I thought about this the other day when a Helpful-Henry
type guy approached me in the parking lot wanting to help me load my
husband's wheelchair into the back of our Blazer. Usually when this
happens---and it happens frequently---I'll just say, "I appreciate the
offer but we have a lift" and the nice guy will fade off into the
sunset. Sometimes a Helpful-Henry---we'll call him the Model 'A'---will
stay around to watch because: 1) he's never seen a Bruno wheelchair
lift, or 2) he's lonely and this is a senior citizen's version of a
pickup bar. This model of Helpful-Henrys will poke around the control
box and tell me about his aunt Tillie's wheelchair, maybe ask a few
predictable questions. Well, if you knew me, you'd know I don't give a
tinker's damn about a stranger's Aunt Tillie's chair but I got a B+ in
small talk at college and I want to keep up the skill. So, I listen and
smile and try to decide if he really does have an Aunt Tillie or does
this Model 'A' just want to split a Metamucil malt with me over at the
Senior Citizen Hall.

If the Helpful-Henry is too young to
remember seeing "Rock Around the Clock." the first time it made the
rounds in the movie theaters, then my mind doesn't blow smoke and fool
itself into thinking that this guy is Sir Galahad and I'm the
hot---although slightly wrinkled---babe in the parking lot that he's
come to save from a hernia. No, I don't get the vapors over the
Helpful-Henry Model 'B's and forget that I have husband patiently
waiting inside the car. I don't turn my face away and quickly pitch some
color in my cheeks or wish I hadn't left my support hose at home in the
drawer. These young pups are sweet, and if I had an unmarried
granddaughter I'd probably invite a few of them over for Sunday dinner.
Assuming they liked Chinese and I could do take-out.

"MacArthur's Park is melting in the darkAll the sweet, green icing flowing down...Someone left the cake out in the rainI don't think that I can take it'cause it took so long to bake itAnd I'll never have that recipe againOh, no!"

I could throttle that guy---Jimmy Webb----who wrote those lyrics. I've
spent so much time in my life trying to solve the mystery of 'who left
the cake out in the rain' that I've about worn out my Dick Tracy badge
and Nancy Drew books looking for clues. Why did they take a cake to the
park in the first place? Was it an innocent sweetness for a picnic or a
hippie generation, drug-laced concoction? Was the cake a metaphor for
crushed love? Did the song writer make a bet with a friend; a hit song
about a cake, no problem! Was the song about the Vietnam War
and the green frosting meant to be the causalities suffered by our
soldiers? Did Jimmy compose that song in a music composition class, like
the rumors say, or were the lyrics written in a blur of drugs and
alcohol with no meaning what so ever? I want that song dumbed down for
me, so I can quit worrying about the damned cake in the park!

Puzzling out the mysteries of MacArthur Park was actually good training
for living with my husband's language disorders, aphasia and apraxia. If
I hadn't pondered the cake in the rain every time I've heard that song
played, would my brain be able to get around something like
understanding that "butt fold" translates to "button my shirt?" Would I
comprehend that "want piece" is not a request for sex but a man seeking
help putting on his shoe? Without MacArthur Park would I know that
"Sha-ming!" means Don is doing his happy dance? My hippie era---my
search for truth in language---everything in life comes back around
again like horses on a carousel. Being a speech affect stroke survivor
is like starring in a silent movie and I, the spouse of one, am the
organ player sitting in the darkened theater struggling to keep up with
the action on the screen.

A synonym, a single word standing in
the darkness of a cave with not one candle to aid as it searches for a
way outside and onto my husband's lips. A metaphor, a monster in a cage
grabbing for the cake just outside its reach. We search for clues in our
pasts---like that cake left out in the rain. Nothing makes sense.
Nothing seems fair. And Don is desperately trying to hold on to
something that is flowing down like green frosting in the rain. "I don't
think that I can take it, 'Cause it took so long to bake it"---a
lifetime of building speech. But Don and I do still have the recipe.
It's in my Aphasia Decoder ring, our shared history. Our walks in the
park that allows me to translate many of the thoughts stuck inside his
aphasic brain.

My heart mourns for the stroke survivors who are
too afraid to wade into Frustration Lake and find their own lost decoder
rings sitting at the bottom, in the murky water. My heart mourns for
the loss of easy communication. A million people! A million people
walking around with their words stuck in the Cave of Aphasia, their ears
pressed up against the wall listening for their rescuers to break
through the dark before their breath is gone.

Jean's
main passion in the writing world centers around educating the general
population about stroke related language disorders, caregiver issues,
widowhood and growing older---often using humor to do so.

July 15, 2014

This article was first published by at Yahoo Contributors but they
are going out of business and the rights have reverted back to me. So if
it seems out of order to the rest of the content here, that is the
reason.

There
is nothing else in a house that sounds like a body hitting the floor. I
heard that kind of thud today and from the kitchen I took off towards
the bedroom in an old lady version of a triathlon competitor---stiff
knees, making my gait bob from side to side as a speed walked, then
hopped over the dog and came to a sliding stop with my socks. My arm was
raised in the air as if I was taking part in an Olympic Torch Relay.
That's when I realized that I had a wooden spoon in my hand and I was
about to drip pistachio pudding all over the place. I did a quick scan
of my husband, Don, lying on his back doing an imitation of a beached
whale at dawn. He wasn't dead or dying so I dashed back to the kitchen
to turn off the stove and deposit the spoon back in the pudding pan. It
would have been embarrassing to call an ambulance, the fire department
and a carpet cleaner all in the same hour.

Back in the bedroom, Don
didn't want me to call 911 to bring help getting him off the floor.
"It's a free service included in our taxes," I pleaded. Still, he wasn't
ready to give in to the fact that his wife is not a female version of
Arnold Schwarzenegger in his prime. We needed help! I thought about all
the books in our library and wondered if we had one titled, "An Idiot's
Guide to Getting a Paralyzed Guy Back in His Wheelchair." Nope, but I
put it on my mental shopping list. We did have a copy of a National
Geographies magazine that has an article in it about rescuing beached
whales. I briefly wondered if it would be of any help with the situation
in the bedroom. Nope, pouring pails of water over Don while waiting for
the tide to come in didn't make much sense in the middle of Michigan.

The first time my husband fell out of his chair I struggled, pushed
and pulled and finally got Don to his knees. By then, I was wheezing
louder than hippopotamus having an asthma attack. But I got his upper
body flung over the bed and managed to hoist the rest of him up on the
mattress and back to square one for making a transfer to his wheelchair.
I don't usually talk about giving wedgies in polite company but it
would be quite appropriate here as an explanation for how I managed this
feat of getting my guy off the floor. The ordeal took more than an hour
and by the time it was over we were both a mass of quivering, sweaty
flesh. "Quivering, sweaty flesh" has its appeal when talking about sex
but for a couple of old farts dealing with a
help-I've-fallen-and-I-can't-get-up situation that phrase can only be
filed in a folder labeled, YUCK!

Finally today my husband gave
in to my begging and pleading. I called 911 and we waited. Don, he
picked that time to point to a burned out light bulb in the ceiling
fixture that he wanted me to change before the emergency vehicle roared
up our street. Me, I was more concerned to see if the dog had dragged
any dirty underwear into the living room. He did. He's a canine pervert.

Two EMT guys showed up at our door: one big and burly, the other wimpy
and girlie. They dragged snow across the carpet and I thought, "Okay,
if Don was dying I'd be glad they didn't take two seconds to shed their
boots." It's a woman thing, I guess, to worry about cleaning details. In
the bedroom, the guys snapped on their latex gloves and evaluated the
situation before the burly guy righted Don into a sit, got behind him in
a weight-lifter's squat and picked all 240 pounds of my husband up with
one big He-Man grunt. I was impressed that he didn't split the seam on
the back of his pants. Mr. Burly then asked Mr. Wimp to take me into the
living room to help him write up some notes.

I sat in my
lady-of-the-house chair naming off drugs and wondering why Mr. Wimp
didn't take off his gloves. What kind of germs do you suppose he
expected to pick up from his paper pad and pen? But I quickly got
distracted from that thought and started worrying about what was going
on in the bedroom. I'd warned the guys that Don has a language disorder
and a very limited vocabulary but I forgot to mention that when he's
tired he reverts back to answering, "Yes" to every question. I hoped Mr.
Burly didn't ask about all the bruises on his paralyzed arm that are
bi-products of taking a blood thinner.

"Did you wife do that to you?" I was worried Mr. Burly would ask.

"Yes," Don would cheerfully, but mistakenly, answer and I'd be in deep
do-do. Getting interviewed by Protective Services is not very high on
my list of 'A Hundred Things I Want to do Before I Die.'
Don
must have passed Mr. Burly's test and he came rolling out of the bedroom
with the guy following up the rear. The two EMT men exchanged a few
words and it was clear they were ready to leave. That's when I knew Don
that was back to his normal self. Out of his lips came his favorite
word. "Garage?" he asked while pointing back and forth between Mr. Burly
and Mr. Wimp.

I translated that in my head and spoke up
quickly, "Don, these guys have other old people to pick up off the
floor. They don't have time to tour your collectibles in garage."

There's
a line in a 1960s movie that is engraved somewhere in the space between
my ears. In 'Two for the Road'---while eating a meal on the French
Rivera---Audrey Hepburn asks Albert Finney: "What kinds of people sit at
a table and don't talk to each other?" Then they both burst out
laughing and say in unison, "Married people!"

Before my husband's
stroke, Don and I never lacked for reasons to flap our jaws. But on rare
occasions when we found ourselves not speaking at a table, that movie
line would have a temper tantrum inside my head and demand an
explanation. Sometimes our silence was from a deep, comfortable
companionship like two sleeping puppies in a cardboard box. Other times
the silence might have been part of a tiny tiff caused by something like
a cap left off the toothpaste---I couldn't help that, I was abducted by
a UFO! Or maybe we'd be sitting silent, both of us voyeuristically
tuned into a dialogue between two space cadets at near by table.

I'm having trouble learning how to be old. I've got coupon clipping
down pat, but I forget to take them to the store. I know about the
two-for-one breakfast special at our favorite restaurant but when I haul
Don out of bed to go, we show up on the wrong day. I know how to knit
but that doesn't count, I've been doing it since I was a kid. I like
cats, but I don't want to split cans of tuna with one on a daily basis.
About the only rule in the 'Old People Handbook' that I've got mastered
is the one about going to the Friday night fish fries.

The fish
fries are held in a no-frills private club with a banquet room and
kitchen, a bar, a couple of bowling lanes and pool tables. It's the only
place in town where you're just as likely to see an Elvis impersonator
for entertainment as you are a Polish polka band that has one member who
missed one too many accordion lessons when he was kid, and the lady's
auxiliary often sells chocolate cake that you can wash down with your
beer. We don't drink but since the stroke Don likes this place because
there's always a chance he'll run into someone from his distance past.
He's out trolling for friends.

At the club, glasses thump on
table tops. Silverware clinks against plates. Tongues are wagging. Lips
are moving. People are laughing---all creating a din as people stuff
white fish into the biggest hole in their faces. Three-hundred-and-fifty
people lined up at tables like dairy cows at automated feeders,
computer chips in their ear tags telling the machine how much cow chow
to send down the shoot. "Hey, I need more fish over here!" a man shouts
while I'm feeling as lonely as a Maytag repairman. What kinds of people
sit at a table and don't talk to each other? People dealing with the
stroke related language disorder, aphasia.

I shake that thought
off like I'm a dog that fell in a river and I remember being in a momma
poppa restaurant in North Dakota where they obviously didn't get many
strangers. It was a no frills kind of place. Good food. Friendly people.
Don wanted to order a piece of apple pie after his lunch and the
waitress said, "I'm sorry, but we don't have any pie."

"Yes, you do," he pointed out, "It's right over there."

"I know it," the girl replied, "But if we sell it before five o'clock our night customers get mad."

Even after a bushel and a peck of macho-man flirting and turning the
hands on his watch to five o'clock, that waitress wouldn't budge.
Tourists just passing through didn't get dessert in that town where the
waitresses undoubtedly all had cast iron rods holding up their resolves.
God, we laughed about that. Back in those days, Don could usually
sweet-talk the freckles off a girl's face, but he couldn't get a piece
of pie in North Dakota.

July 14, 2014

The
dog needs his own alarm clock. I'm sick of fighting with him to see who
gets to pee first in the mornings. My bathroom is at one end of the
house and he needs to be at the other end and I can barely run fast
enough to service us both. One of these days I'm going to pee my pants
trying. If Cooper could just get himself up fifteen minutes before I do
he could let himself out, trek around our deck, do his business then
come in and lick us awake. It shouldn't be too hard for the dog to learn
the door opening trick. We've got those handicapped levels (instead of
door knobs) and he's a smart little bugger. Don, my husband, is no
competition for pee time. He's right side paralyzed and pees in a
urinal. Ah, the feeling of togetherness I get when Don and I pee at the
same time! "The family that pees together stays together," I often tell
him from the throne.

Some of the words that tumble out of my
mouth---entirely of their own volition---shock even me. Like: "Don, do
it yourself, I'm not your mother!" This shrew-lady comes to our house
mostly after Don's showers when he wants me to pick out his clothing.
We've got this great, wheelchair accessible closet with hangers down at
his level and low hooks for his not-ready-to-send-to-the-cleaners wool
shirts. And it's not like his choices are as hard as those on an SAT
test; it's mostly wheelchair compatible sweat pants and tee-shirts. But
every day it's the same old thing; he'll sit in the closet for a few
minutes, then he'll bellow out "Jean!" or "Cooper!" which ever name his
language disorder, aphasia, plops on his tongue.

If I'm in
another part of the house I can't be entirely sure, from the frantic
tone of his cry, if: 1) he's fallen and he can't get up, 2) there's a
spider on the wall, 3) he can't decide what to wear, 4) I forgot to
flush the toilet, or 5) the house is on fire. So, I come running at the
sound of his voice as if it's a dinner bell at an Over-Eaters' Anonymous
meeting and I'm the hungriest woman in the room.

Can someone tell my why this full-grown, macho guy developed a fear of itsy bitsy spiders since
acquiring a wheelchair? It doesn't matter if they are butt-ugly and
scary or cute like Daddy Long Legs from a Walt Disney movie. He sends me
off on a hunt like I'm after a bull elephant in heat that's just torn
down a primitive village. Glory hallelujah! With Kleenex in hand, I
stalk the little beast and get my man! Shall we have him stuffed and
mounted? Gone are the days, when I once made a big deal over giving a
reprieve to a spider living in a corner. "Spider," I said with dramatic
wave of my arm, "This is not your day to die." And I completely missed
the possibility that it could be a female ready to lay eggs while it
waited for the governor to call and give it another pardon. Oops.

Back standing in front of the closet, I have to decide: is this a
Shrew-Lady day or did Miss. Manners stop by? I hate having two
personalities! On Miss. Manners' days I might sweetly suggest, "Don,
you've only got three colors of sweats. Let's pick one. Good choice!
Now, let's see what color shirt will go with your pants"---straight out
of the pages of "The Caregivers' Guide to Building Self-Esteem." It
might be a coincidence, but I think Miss. Manners comes by on the days
when we're in a hurry. On Shrew-Lady days, she makes Don pick out his
own outfits, and then she bits her tongue when the color combinations
look like they were selected by a blindfolded dart thrower.
Cooper, he's met Shrew-Lady too. That silly little pompous poodle has
learned how to take short cuts underneath Don's wheelchair when he's
blocking a doorway, but he couldn't figure out why Shrew-Lady got so
upset when he snatched the top piece of bread off a sandwich and dropped
it mustard side down on the carpet.

This article was first published by Yahoo Contributors, in their humor section, but they
are going out of business and the publishing rights have reverted back to me. So I've moved it to my blog to preserve it. If
it seems out of order to the rest of the content here, that's the
reason. It was written before my husband passed away.